So the doc says you have MS...

[kwarendorf]

Now what?  Much of what is you read about MS in cyberspace is doom & gloom. The dark side of MS seems to get most of the attention. MS in some cases is worthy of all its bad press. It is a serious disease and can greatly impact quality of life. But it’s not always what happens.

Having MS doesn’t guarantee you’ll be in a wheel chair next week. Having MS doesn’t mean you’ll have to quit your job. Having MS doesn’t guaranty the end of life as you know it.

I am 55 years old. I found out I have MS about 3 ½ years ago. When I was diagnosed I had old and new lesions in my brain, c-spine and t-spine. I had o-bands unique to my spinal fluid. I rang every bell, loudly. At the time it was determined that I had my first relapse 20 years earlier. So my MS went untreated for 20 years. My doc determined that I was no longer relapsing remitting, but had moved to secondary progressive.

I’m doing just fine :-) I live on my own. I go to work 5 days a week. I go grocery shopping. I travel. I have a great girlfriend.  I ride my bike. I do just about anything I want.

Having MS stinks. Given the choice of having it or not, I would choose not. I would choose not to have double vision for the first 5 minutes of every day. I would choose not to take meds 3 times a day for neuropathic foot pain. I would choose not to allot 10 minutes to pee when it should take 10 seconds. I would choose not to have a ringing in my ears 24/7. I didn’t get to choose.

What I did get to choose was to listen to my doc. I take the meds he tells me to, when he says I should. I see a physical therapist periodically. With the help of a naturopathic doctor I completely revamped my diet. I do what I need to do to live my life in spite of MS.

So for those of you who have just found out you have MS, and those of you on the diagnostic path to MS, take heart. Life with MS can be pretty damned good :-)

Kyle

[MShasMS]

Thanks guys, it's good to hear positive people. Us newbies see so much gloom & doom when we start researching  (and looks of fear from those closest to us when they find out ) that it can make you kind of nuts. I have to look at it like hey I got 45 years without this who says in the years ahead of me I wouldn't have some of the health problems that could go with MS anyway just because of getting older. I married and had kids "late" (they are 6 & 11) so I don't have the luxury of having a pity party and giving up. My personality is a little too pushy and take charge for that anyway, lol. I look forward to checking back often for any words of wisdom or advice from you old pros that seem to see life like me, as something to dive in and conquer (or just survive on the bad days) not something to fear (what you can't change).

[Lulu54]

If I could i would make several of you the poster child for living with MS - Kyle and Immisceo have nailed so many of the important points and done so without the oversimplistic and bordering on trite  'I have MS but it doesn't have me' mantra that so many people thinks explains what living with a chronic disease is like.

Life does go on - how we do that is often changed or compromised by MS but the world doesn't stop and neither should we.

The variety and intensity of our disease varies so much from person to person that we can't compare ourselves to others. But we can learn from people like Kyle and Imme and apply what we can to our own experience.

Thanks  to everyone for sharing their approach to life with MS,   - Laura

[immisceo]

Oh, Kyle. If we still had easily accessible Health Pages, I'd nominate this to become one. I too think it's important to acknowledge the full spectrum of life with MS, not just the admittedly heart-breaking extremes.

So many people wind up on these forums in a state of extreme fear, worry, and confusion. It would be wonderful to at least provide a counterpoint to what they already have as their image of MS in their head. Can I play?

I'm 34 years old. I found out I have MS 4 years ago. I was text-book, from being dead centre of the most frequently diagnosed demographic (20-40 year-old white females), to the objectively observable, near pathognomonic sign. Internuclear opthalmoglegia = my party trick was having eyes that pointed different directions. I had unique o-bands, a lesion-laden MRI, a recent history of a foot that stopped working, and a MacDonald-sealing case of optic neuritis a few weeks later. I was part of the club. RRMS.

So the last four years? No relapses. Yes, some days the fatigue really stinks. Some days it even really, *really* stinks. But my life hasn't really changed. I walk to work, I usually walk to get our groceries with my trusty rucksack, I walk to the hospital where I have my quarterly appointments. Okay, this is Dublin so things are a lot more compact than suburbia, but it's still miles a week.

I hang out with friends, I laugh until hoarse with my husband, I've dived headlong into a hobby I'm passionate about that just so happens to mix perfectly with my occasional fatigue—knitting is great for days on the couch! It keeps me fulfilled on the creative, tactile, aesthetic front which is important to my well-being. I've climbed a (short) mountain in Spain in August, I've climbed a (shorter) mountain in Co. Mayo. I've swum topless in the Mediterranean and danced like an eejit at an Irish wedding. Life has continued and for the most part on my terms.

But I too would choose not to have it. It didn't impart to me more appreciation of life, greater insight into anything philosophical, any sense of anger or gratitude, etc. Basically, my priorities were already in line. MS is just a sucky bump in the road that I contend with.

However, I *would* choose to know what the heck people are on about when they say women reach their sexual peak in their mid-thirties. I would choose to not feel a bit overwhelmed some days when it comes to summoning the energy to bathe or, you know, eat. I would choose to be the dependable friend I know I intend to be instead of the flake who does last minute cancellations when the energy just isn't there.

What I *did* get to choose was grabbing the opportunity to be a part of a clinical drug trial, thus ensuring I had monthly face-to-face contact with the pros in that initial whirlwind couple of years when everything was new and confusing. What I did choose was not to ignore my past history with depression. I'm vigilant in its treatment as well and have a policy of transparency on that score with my MS team. What I did choose was to arm myself with facts, not fallacies and flimflam even when said facts are frustrating and don't provide the all the answers we want just yet.

It took about a year for me to relax from a hyper-vigilant 'the sky is falling' state of mind when it came to thinking ev-er-y-thing was an impending relapse, but that settled down. Life with MS that came out of the blue, in the prime of life, can also be pretty damned good!

[figuerpa]

Love love love this! Well said and so true. I've been diagnosed for almost 5 years now and I too work 5 days a week, go shopping and live life.

I may walk slower and not walk as far as I use to without stopping for a break but I move on.

This reminds me of my favorite quote, " Life is not about waiting for the storm to pass, its about learning to dance in the rain" we all have to learn to do things a little different but we should never stop living!

Thank you so much for this, in bad times a post like this is what we need to remind us that it could be worse.

Paula

[davincidanes]

Thanks, Kyle.  A very inspiring post for us that are still on our diagnostic journey and in the early stages of learning.
~Linda